🧵
An open letter to Anna Gregorowski, chair of BACME (British Association of Clinicians in ME/CFS), from Members of the ME community, facilitated by the Chronic Collaboration.
The august CDC in the US have redesigned their ME/CFS section [which contains sections for patients/general public & healthcare providers including a section from medical students].
Apropos of oh-holy-shit-I’ve-got-3-working-days-to-do-ALL-THE-THINGS, I’m reading self-help articles about how to deal with the #SundayScaries…
My God, some of the advice is SHOCKING:
“Make your weekend more enjoyable by doing work at a café, or in your pyjamas”
🫠
However bad things might be, at least I know that working (at 3am) on my days off is a shit idea, and both unsustainable and counterproductive as a habit.
If there’s one thing I’ve learned from living with #MECFS, it’s that “a change is as good as a rest” is just not true.
In the absence of rest, a change might be better than nothing, but you still need rest - and REGULARLY.
Eg: 1hr physical exertion + 1h mental exertion is better than 2hrs mental exertion, but neither gives any rest at all. You might not know it, but your cortisol levels and your nervous system absolutely do.
"We have engaged a distribution company to ensure leaflets & posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display & that as leaflets are used, they can be replaced, & usage monitored"
Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new #chronicIllness. The author does a great job portraying some struggles common to #MECFS and #postCovid : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of #PEM. Plus, the suspense makes it a great audiobook.
Heute mal wieder im Büro gewesen, wo der soziale Druck - ausgesprochen oder unausgesprochen - auf mich immer am stärksten wirkt. Übertreibe ich nicht vielleicht doch mit der Maskenkonsequenz?
Und dann kommt man nach Hause und liest das. 🤯
"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an Long Covid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."
Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"
A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024
New research from UK team:
Examining well-being and cognitive function in people with #longCovid and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study
Some pretty great talks at #UniteToFight2024 Day 1, but literally ALL the people giving talks are only active on #Twix and most of the discussion happens there?!
I could not go back to that platform for a million moniz, but we do miss out on a lot here.
Switching to Mastodon has been a very isolating experience for me. Almost the entire #LongCOVID community is still active on that horrible fascist website. I do find most information here eventually, but second hand.
Whenever i hear about severe cases of ME/CFS or Long COVID, i realize that i probably have a medium or even mild case. But then again, even such a medium or mild case can be so very debilitating. And all this with the sword of damocles hanging over it, that symtoms could always get worse.
No one wants this horrendous illness. Stop the gaslighting!
Had just enough energy to listen in on 3 of the 20minute webinars today. https://unitetofight2024.world/program/
Gives a bit of hope for all patients who are suffering from post acute infection diseases. Really love to see the science growing.🙏
It goes on for another 2hours and tomorrow. You can still join. I think presentations will be available later too
(See birdsite for loads of tweets. The LC/MEcfs community is big there)
YouTuber and behavioural scientist Pete Judo presents the infamous #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”